- Jonny Kennedy
Jonny Kennedy (
November 4 ,1966 -September 26 ,2003 ) [ [http://www.imdb.com/name/nm1961977/bio Jonny Kennedy - Biography ] ] was the subject of the documentary "The Boy Whose Skin Fell Off" [ [http://www.businesslink.gov.uk/bdotg/action/detail?type=ONEOFFPAGE&itemId=5000549276&site=101 Jonny's Mum ensures his memory lives on | Business Link ] ] , which documented the final months of his life as he suffered from the rare inherited condition known as dystrophic epidermolysis bullosa (EB or DEB). He was born with no skin on his left leg. Kennedy ultimately died of cancer. [ [http://www.independent.co.uk/life-style/health-and-wellbeing/health-news/jonnys-legacy-551540.html Jonny's legacy - Health News, Health & Wellbeing - Independent.co.uk ] ]Kennedy was extremely candid about his feelings concerning his upcoming death in the film, which also featured interviews with his friends and family. When the film was first broadcast in March 2004 on
Channel 4 in the UK, it attracted around 5 million viewers and helped to raise £500,000 for the EB charityDEBRA . [ [http://www.channel4.com/health/microsites/B/boy_whose_skin_fell_off/index.html The Boy Whose Skin Fell Off from Channel4.com ] ]At the time Kennedy was born, there was no
prenatal test for EB. Kennedy was a Spiritualist who saw death as "a freedom and an escape." [ [http://www.timesonline.co.uk/tol/life_and_style/article1047666.ece 'Death is freedom, life is a lesson' - Times Online ] ] The film saw him fulfill his lifelong aim of flying in aglider , which led him to think of life beyond death - "I think I'll be bored if the angels sit about on clouds plucking their harps all day. I'll be up there, getting them off their clouds, doing drops of 1,000 feet and then pulling up. I think you need to spice things up a bit."He died in his
wheelchair on a train returning from a meeting at10 Downing Street withCherie Blair .One of Kennedy's favourite bands was Queen; at his funeral, the Queen song "
Don't Stop Me Now " was played.* [http://www.channel4.com/health/microsites/B/boy_whose_skin_fell_off/index.html] Channel 4 Health
* [http://www.timesonline.co.uk/tol/life_and_style/article1047666.ece] Times Online: Death is freedom, Life is a lesson
* [http://www.independent.co.uk/life-style/health-and-wellbeing/health-news/jonnys-legacy-551540.html] Independent: Jonny's LegacyReferences
External links
* [http://www.jonnykennedynortheast.org.uk Jonny Kennedy North East] (EB charity) - Charity set up to help sufferers of EB and their carers in Jonny's memory
* [http://www.tontopress.com/jonnykennedy/ Jonny Kennedy: The Story of the Boy Whose Skin Fell Off] - book written by Jonny with friend Roger Stutter
* [http://www.debra.org.uk DebRA UK] (EB organization) - had strong ties with the Kennedys
* [http://www.emedicine.com/derm/topic124.htm eMedicine article] on inherited epidermolysis bullosa, of which recessively inherited dystrophic epidermolysis bullosa is one type
* [http://www.ieb-debra.de IEB DEBRA e.V.] Interessengemeinschaft Epidermolysis bullosa e.V. DEBRA Deutschland
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